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NothingButLove

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Lost a loved one
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11/2016
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Anaheim
In an attempt to get my wife off suppositories, I changed my wife’s diet and have gone from hard rock-like constipation to soupy diarrhea. I need to know where I go from here. Here’s the story…

My wife got her feeding tube last year on September 22nd. After a couple of weeks on IsoSource 1.5, my wife got constipated and we began using stimulant laxatives. Specifically, we were using Dulcolax (Bisacodyl 10mg) suppositories. (I know, I know… this was probably a big mistake.) Recently, we switched DMEs and the new company provided us with Jevity 1.5. I thought the extra fiber might help her go by herself, but she seemed to be getting stopped up even more. I was worried she was becoming impacted.

I decided to change up the feeding process to see if I could solve the problem. I increased her water intake and added docusate sodium 100mg stool softener. Additionally, I started warming the water I give her. I did this for a week and didn’t see any results. I then added a probiotic but nothing changed.

Last week, I gave her Miralax and 4oz of prune juice. After just two days, I now have diarrhea. That’s to say, her stool is a consistent thick soupy texture. There is no hardness to it at all. Also, she can’t control it. I’ve gone through two packages of Depends already.

Looking at her stomach, she still seems bloated. At this point, I’m not sure if it gas, she’s impacted or maybe that’s just how her stomach looks now due to progression. At the moment, we’ve gone back to just water and Jevity.

So where do I go from here? Should I take her to the hospital and have her checked out? Should I just go to emergency? Any advice is appreciated. Thanks!

Rob

PS: I’ve been away from the forums for a while. I wanted to become super active on the forums after the feeding tube was placed. However, things didn’t quite work out that way. Who knew ALS could take up every second of our lives?
 
Hi Rob,

Ultimately, I would try to move on from corn syrup-based formulas to real food. But meanwhile...the big danger with diarrhea is losing fluids and electrolytes. I am not sure on how long the diarrhea phase has been, but I would make sure she is hydrated, maybe bump up the sodium a touch (broth, e.g.) And maybe thinned fruit nectars to try to get some bulk back in, without overdoing it.

Before the diarrhea began, not sure whether the volume of stool, apart from its being hard, was normal? So DK what volume is lurking within, if you will. I guess the short answer is we try to avoid ERs if possible but if you see changes like lethargy, fever, confusion, tenting in the skin when you push on it, etc. you want to worry more and get a home health nurse out, call a nurse practitioner that does house calls, or last resort visit ER.

But some PALS just don't do well on certain formulas. Jevity may not be the best thing for her. So if you keep feeding it and things get worse, I would do something else. Often the DME has a contract with another formula, it's just not as cheap, so they will push their primary contract until you say no.

Opinions/experiences differ, but when she gets back to baseline, I favor "natural laxatives" like coffee, salsa, etc. over dosages of drugs that are less easy to titrate, if you will. And I would really consider the formula thing since again, you control the type and amount of fiber.

Best,
Laurie
 
I would have her checked and be sure she isn't impacted first up.

Then follow the great advice Laurie already gave - and please let us know!
 
I would get a NP out to assess her. If she is not impacted, I would switch to Liquid Hope or some other feeding that resembles actual food. Maybe blending meals in a Vitamix would be easier and less expensive. You should be able to get a doctor's order for Liquid Hope as being medically necessary due to lack of tolerance of the other formulas.
 
My wife's diarrhea had been going on for about 4~5 days. It wasn't the real watery type like you get when you have the flu. It was more like wet toothpaste. I had already bumped up her fluids so she was well hydrated. Before I started messing with her diet, she was definitely taking more in than what was coming out. Her stomach (intestines) had enlarged. There was definitely stuff "lurking within". This and a desire to get off suppositories is what prompted me to make the changes to her diet.

The day after I made the original post, I went to my wife's PCP's office and spoke with the nurse practitioner. She thought the Miralax is what caused the diarrhea. My wife's 5' 2" and 90 lbs. I probably should have given her the children's dose. The nurse practitioner suggested I give her an enema. She also put in a request for a dietitian and a GI doctor.

Having never received or given an enema. I felt a little iffy about it. However, everything went OK. The first one on Tuesday got rid of the watery toothpaste stool. I gave her another one on Wednesday and that definitely got rid of stuff that had been lurking within. Her stomach looks better now.

On Thursday, she felt she had to go but couldn't push it out. We waited until today to do anything about it. Not wanting to give her more suppositories, I gave her another enema. What came out looked like she should have been able to push it out herself. Not sure why she couldn't do it herself. ALS? Suppository dependence?

I'll look into changing the formula. I see our old DME, OSO Home Health Care, carries Liquid Hope. We go to the clinic this Tuesday. I'll see if I can get the doctor to write a prescription.

Thank you Laurie for your help.

Rob
 
Hi Rob,

Glad she is better. Yes, it can be ALS itself that makes pushing hard, but if she was able to push before all this happened, some ability may return for some period of time.

Note -- targets for BMs every day or even every other day may not apply to all PALS because of the changes in diet, mobility and peristalsis. So be more guided by how she feels than the calendar. Enemas that are too frequent, just like suppositories, can diminish natural pushing.

Coffee, salsa, etc. don't affect fluid balance the same way as enemas and suppositories, and create gas that can be helpful in sort of getting pushing underway, or at least getting things started even if she can't finish. So that is why I recommended considering starting there (salsa has a liquid component for the tube). But all these things take some trial and error.
 
Laurie,

I forgot to ask but in your first reply, you said, "I guess the short answer is we try to avoid ERs if possible..." Why is that? I thought you meant to avoid exposure to pneumonia and other sicknesses. My aunt thought you meant to avoid using hospital resources intended for emergencies. Who's right?

Rob
 
You.

From a big-picture perspective, of course, we try to not overload ERs that we may need for something more serious, but on these Forums, the focus is the duty of care to our PALS.

Not only are ERs disease hotbeds, but the care is often substandard -- most techs and clinicians are unfamiliar with, yet at some level terrified by ALS. Often ignorance and terror translate into serious errors of both omission and commission.
 
I agree with Laurie. I had my brother at the ER twice and learned both times that not one person there knew what to do for my PALS. We learned very quickly.
 
I will say for my DH, he lost the ability to push at all. Part of the ALS for him. One thing I can do, if the stool is soft, ish push on his belly a bit and generally that can make the stool come out. Kind of trial and error where to push and be gentle, increasing pressure a bit as tolerated. Otherwise, I’d that, or an emema or suppository doesn’t work, then you need to give up and go in after it. Not a pleasant experience for either, but it gets the job done.

Just some other thoughts.
 
Yes, I shouldn't have implied that coffee/salsa was the whole answer. Sometimes we did have to go in with gloves. But I will say that does not have to be on a set schedule.
 
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